Clearly I have a vested interest in the subject matter, and being able to hear from a high functioning "Aspergian" (as he calls himself) was fascinating. Being allowed to peek into his life to see his challenges and successes has caused me to spend much of the day wondering about my own little Aspergian -- does he think this same way? Does he interpret life the way John did as a young child? Is there some form of genius inside his brain that is just waiting for the right neurological pathways to form? And, heaven forbid, is he going to remember every failure I have as a parent in vivid detail and publish it 40 years from now?
Will he learn how to interact appropriately enough to have a family of his own? When I asked him today what he wants to be when he grows up, his immediate response was, "a daddy". This book gave me hope that that may be possible for him down the road. Maybe.
He is making progress in many areas -- in fact, he flunked out of speech therapy last week when his most recent test scored indicated he was well within normal limits in 4 areas and functioning close to a 7 year old level on another area. While these are positive signs, there is a part of me that is so sad to have him "lose" his therapist. She has been so kind and loving to Keaton and I know he will have a hard time understanding that his "reward" for improving is to lose out on a positive person in his life. She understands Keaton on a level that most people don't, and understands more clearly how his brain works. Her work over the last 3 years has improved his social skills dramatically, and although he still struggles in some areas, I am hopeful that things will continue to get easier for him with practice.
Even school seems to be improving for him since his therapist attended an IEP meeting (where his "team" plans the details of his school life) and threw her two cents into the mix. His behavior has changed at school and he is now coming home with a smile on his face and a feeling of accomplishment instead of failure. I cannot put a pricetag on that change.
I suppose important people will continue to flow in and out of Keaton's life as they do in all of our lives, but my hope is that more and more people will come to some sort of greater understanding about the way Keaton's brain works and the challenges he faces. I think this book would be a good starting point -- it is a quick and interesting read that is now being integrated nationally into many educational settings. If anyone is interested in knowing even more about Asperger's, I recommend The Complete Guide to Asperger's Syndrome by Tony Attwood.
I know that I have been given a tremendous gift by being allowed to raise Keaton and have him as part of our family. He brings such a unique energy into our home and I can't imagine not having him here. Those of you who know him in real life know that he is a special little person, and those of you who don't know him are missing out;)
Read the book.
18 comments:
You're a good mom.
I have an uncle who was diagnosed with Asberger's when he was probably 40ish also and he has, for the most part, been able to hold down a job, although with the economy, that hasn't always been the case for anyone. Also, he has 5 kids and has been married for over 30 years.
I'm just sayin..it can totally happen.
Keaton is adorable.
I think Keaton is going to do amazing things as he grows up, mostly because he has had you to fight for him and look out for him. We miss you guys!
You know I totally believe Keaton will be a daddy one day. How could he NOT find a girl who will love him? What's not to love??? Plus, he's gorgeous. He's going to be a heartbreaker, that one.
Also too? I think Keaton is going to do crazy wonderful things for the world with that brain of his. My heavens, that BRAIN!!!
And last but not least, with his early diagnosis and you and Boone pulling for him, I think he will be able to avoid many of the Asperger's-specific social pitfalls and pains that John Robison experienced. No kid gets out of childhood entirely unscathed, but I don't think Keaton's experience is going to be much worse than any other kid out there. If you'd asked me two years ago, I might have said otherwise, but he has come a LONG way since then thanks to you and Boone pushing for diagnosis and therapy. Keaton is a happy, happy kid, and he's going to stay that way because of your love and protection.
Hugs to you. All of you. And thank goodness for the special people who come in and out of our lives a just the right time.
A typo, but I'm leaving it there ... so there you go, Anna (in advance).
And since I'm commenting again ... more hugs.
Adding it to the list. I can't wait to get some one-on-one with Keaton. I miss him- and the rest of you for that matter.
Brinlee keeps pics up of all the cousins and they are regularly "characters" in her imaginary play. I'm interested to see all the dynamics between the children but think she and Keaton will enjoy each other a lot. He is her husband most days, after all.
It is so obvious how many people love Keaton. Look how many nice things people say when you talk about him. I can't wait until you move closer and I can see his cute, contagious little smile more often.
I loved this post. I like that you keep your readers up-to-date on Keaton, because we've become fond of a child we will probably never meet.
I would welcome an opportunity to get to know your other children more closely.
As you know, my kids are grown, and I'm happy with that. But, children can be quite magical and I am thankful I am allowed to see a peek of the magic that happens sometimes in your house.
*****************
Just a word of wisdom - in a few years your children may look back and read this blog. While Keaton occupies a great deal of your energy, I know you love and adore all of your children. Don’t make your children wonder why there is so much more written about Keaton then there is written about them. Cause, gosh knows, sometimes I get that from my grown children “you did XYZ for them and you didn’t for me”. Trust me – it never ends. :-)
You are an awesome mom, Colie! I love being able to read about Keaton's progress. It makes me smile to think there are people, like his therapist, out there that dedicate their lives to making life better for kids. I will definitely put this book on my reading list!
I am well aware that Keaton gets substantially more blog space than Rylan and Branik. It worries me and has for awhile, but I'm not sure what to do about it, really.
On the one hand, I don't want them to look back and think, "Gee, Keaton got a lot more mention on Mom's blog than we did -- that's not fair."
And on the other hand, I can say that it isn't fair that Rylan and Branik make friends easily while Keaton gets left out. And I can say it isn't fair that Keaton spends twice as much time in trouble as his siblings do.
And sometimes I just need to pour out my imperfect feelings over raising a child with special needs. Writing about Keaton specifically helps me to deal with the intense emotions and challenges and frustrations that I have to deal with because I'm his mom.
I don't love Rylan and Branik any less -- of course I don't. But I don't need the therapy that comes from writing to ground myself well enough to raise them. I don't know what the future holds for Keaton. I don't know how bad things may or may not get when he is a teenager and his social issues come front and center. That scares me. It worries me sick and keeps me up some nights.
And sometimes when I am heartsick over the things he may have to deal with or the things he may never get to experience, I turn to my blog and essentially beg people to tell me how great he is. I need to know that Keaton is loved and accepted, and I find that support here more than anywhere else.
Really, I guess what I'm trying to say is that I at least sort of know what I am doing and what to expect with Rylan and Branik, but I don't know how to deal with Keaton and I don't know what will happen to him 10 years from now. That is why I blog so much about him and not as much about the other two.
That being said, I worry about what they will think years from now too. I hope that I will have taught them enough compassion at that point that they will realize their imperfect mother's blog was a place where she looked for support to deal with a challenge she never asked for.
One more thought -- what if years from now Rylan and Branik are happily living successful lives of their own, and my little Keaton is still living at home and wondering why he can't be like everyone else? What if he thinks to himself, "Nobody likes or understands me?" What if all this blogging about Keaton turns out to be the way he can prove to himself that he is special and loved -- by his mother, by his family, and by strangers?
I know I could be wrong, and I know things are not balanced, but I'm doing the best I can.
Amen, you are. And likely better than most in my opinion.
If someday your kids read upon this blog, they will likely understand the topics about which you write -- having lived it (because let us on the "outside" not forget that they too are and will continue to be living it) -- and can appreciate the context in which it is written -- well explained by our Nicole.
Your posts are not, "Well isn't this one the cutest most perfect thing you've ever seen, and ohyeahtherearetwomorebutwhatever." I have no doubt that Rylan and Branik get the love and support and kudos they need every single day and won't need to find evidence of your love and awe for them in a blog. They will be right there beside you hoping that their beloved brother enjoys all the wonderful things in life that they do, thankful that their mom and dad fought with everything they had to ensure his best and brightest future.
Kids need to be loved and shown love in different ways. I can still tick off the parenting inequalities bestowed upon my brother and me at various places and times in our lives. But I don't feel for a second loved any less. Or more.
We all know where to find the blogs featuring perfect kids with perfect equality. But that's not the blog you write. And thank you for that. What you write we all need to hear because we will all meet Keatons in our lives, even if it's not yours. You have the power to change behavior by making "Asperger's" real, personal and incredibly lovable. And if we can provide a network that lifts you up when you need it, then God is working his magic just like he promises.
Which keeps you going for theothertwoalsotoo.
More hugs.
P.S. Chase just saw Keaton's picture and asked "is that my cousin? I love him." So there you go. His smile works its magic on both sexes.
And one more thing, because, you know, I haven't said enough.
Sometimes you can't worry about "someday" -- sometimes you just got to make it through today.
Thanks Deb. You illustrated one other point I have had bouncing around in my head all afternoon:
My posts about Keaton bring awareness that there are people LIKE Keaton -- that the "normal looking" kid over there melting down may not actually be a spoiled brat, but may have an autistic spectrum disorder. I think a lot of my posting about Keaton is to put a face with a diagnosis and help others realize what a charming little person he is, despite the challenges he faces.
I could very easily fill this blog full of posts about how brilliant, cute, tender ALL of my children are -- but who does that help? And you're right, Deb, that's just not the blog I write.
However, if even one person learns about Asperger's enough to bestow compassion where before they might have passed judgment -- whether to Keaton specifically or to someone else -- then my meager little blog is worthwhile.
I hope this doesn't come off as defensive. I am truly just trying to explain why I write the things I write, and to assure everyone that I am aware of how things appear but not likely to change drastically any time soon.
Nicole - I understand where you are coming from. And, I hope you realize that I wasn't judging you.
As a mother, I am in an entirely different place than you are. My children are grown so I get to hear about the things I did wrong, or the times one child felt I favored another child, or how one child got less. I’m telling you, it never ends.
I have a child who has a birth defect. We didn’t learn about it until she was 16, and I think sometimes she might believe she has this because of something I did, or didn’t do, when I was pregnant. I KNOW there was nothing I did, or could have done, to prevent this. But, I still feel guilty and I tend to give her more of my time, energy, thoughts, and money.
As a parent, I know that it is impossible to treat your children equally because each child has different needs, though I do try and treat them fairly. And, to be honest, sometimes our personalities mesh better with one child than another child.
Being a parent is hard work, and it doesn’t matter how old your children are, we always worry about them. All I really know about being a parent is that you do the best you can, and hope you don’t screw them up too bad.
Nicole you are a fantastic mom and thank you for expressing yourself on your blog. I love Keaton and all your kids. I look forward to all your posts and makes me feel like I am not missing so much in your families life. Love you girl!
Yes, Keaton is a precious, special little person. Love you all.
OK, So this comment has nothing to do with you post I just believe that you will see it here first. We had a great Date night and good workouts this weekend and I really wanted to write you a note to say to both you and Boone that we are waiting and excited. It will be fun to tell the hostess a 4 top not "Dinner for 2". Hurry before Colorado fills up and they close the gates and tell everyone else we are full.
Wow! I worked for DSPD in utah for years. I have seen the amazing parents and I have been a "support person" in an IEP meeting before.. Love it when the school brings every expert in on one side and leave the parent on the other...I say expert loosely. So then a smart ass social worker was brought in to even up the score!!!
Anyway I worked with children and Adults.. I find the experience amazing and unique. If every person remember that we are great in our own way and everyone doesn't have to blend in we will do just fine...
Post a Comment